Monitoring deterioration

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
My husband was diagnosed with Alzheimer’s in February, though I knew we were living with some form of dementia for at least 2 years beforehand. The diagnosis was given to us at a local dementia clinic who then prescribed Donepezil, referred us to a support worker (who I have spoken to once), told me about the Alzheimer’s Society, passed the medication over to our GP’s surgery and then more or less left us to it , with a “We’re here if you need us, call if you need to “ promise.
Is there no form of monitoring my husband’s steady deterioration? There has been no mention of any follow up of any kind to gauge how he’s getting on - or not. If it were any other form of serious illness, he would have regular hospital/clinic checks to monitor the disease’s progress. But with dementia there seems to be nothing.
Is it down to me now to wait until there’s an incident then call for help? Any advice?
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
Hi. I care for dad. He doesn't have any dementia monitoring. Only monitoring for heart and kidney issues and that's only when I send an email reminder to the doctor's.. Basically you are left to get on with whether you want to or not.
Sorry not to be able to give more advice.
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,248
0
High Peak
My husband was diagnosed with Alzheimer’s in February, though I knew we were living with some form of dementia for at least 2 years beforehand. The diagnosis was given to us at a local dementia clinic who then prescribed Donepezil, referred us to a support worker (who I have spoken to once), told me about the Alzheimer’s Society, passed the medication over to our GP’s surgery and then more or less left us to it , with a “We’re here if you need us, call if you need to “ promise.
Is there no form of monitoring my husband’s steady deterioration? There has been no mention of any follow up of any kind to gauge how he’s getting on - or not. If it were any other form of serious illness, he would have regular hospital/clinic checks to monitor the disease’s progress. But with dementia there seems to be nothing.
Is it down to me now to wait until there’s an incident then call for help? Any advice?
I'm afraid this is fairly typical. The Memory Clinic seem to be all about diagnosis - once they've done that it's Job Done - off you go!

As you say, with any other illness there would be regular check ups, especially if someone was deteriorating. Not so with dementia. If there are other medical problems you can see the GP but no one 'does' dementia. The attitude seems to be, 'Yes, you have dementia. It is progressive and terminal. There's nothing we can do.' If you get a 'We're really sorry,' at the end of that you're doing well.

I'm sorry you've been left to just get on with it. I found this forum the most helpful place on earth...
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
I'm afraid this is fairly typical. The Memory Clinic seem to be all about diagnosis - once they've done that it's Job Done - off you go!

As you say, with any other illness there would be regular check ups, especially if someone was deteriorating. Not so with dementia. If there are other medical problems you can see the GP but no one 'does' dementia. The attitude seems to be, 'Yes, you have dementia. It is progressive and terminal. There's nothing we can do.' If you get a 'We're really sorry,' at the end of that you're doing well.

I'm sorry you've been left to just get on with it. I found this forum the most helpful place on earth...
It certainly is - thanks xx
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
Hi. I care for dad. He doesn't have any dementia monitoring. Only monitoring for heart and kidney issues and that's only when I send an email reminder to the doctor's.. Basically you are left to get on with whether you want to or not.
Sorry not to be able to give more advice.
I had a feeling this would be the response but thought I’d ask! Thank you xx
 

Forgetmeknot

Registered User
Jun 9, 2021
34
0
Hi - I was also left to get on with things, without any help. Then two weeks ago mum had a fall and is now declining rapidly, struggling to swallow, not eating, drinking or getting out of bed and has gone from about 12 stone to skin and bone. I have been trying to get help from the doctor, social services, etc, to be told 'you should have asked for help before you needed it and then it would be easier now'!! Whatever you do, you just can't win ...
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
Hi - I was also left to get on with things, without any help. Then two weeks ago mum had a fall and is now declining rapidly, struggling to swallow, not eating, drinking or getting out of bed and has gone from about 12 stone to skin and bone. I have been trying to get help from the doctor, social services, etc, to be told 'you should have asked for help before you needed it and then it would be easier now'!! Whatever you do, you just can't win ...
I’m so sorry to see this and hope you can get some help for both you and your mum.
Why would anyone ask for help before they need it? I suspect that if we did do that, it would be a case of “well everything’s fine at the moment, get on with it and call when you do need help!” No win situation.
Best wishes xx
 

try again

Registered User
Jun 21, 2018
1,308
0
That's why I got a social service adult assessment. Mum is self funding, I think it cost about £200. She sorted out the care agency , which is cheaper than a private care agency and if I complain about carers and email the company and her she has been on top of it
I also inform her of any progression and she has reviewed a couple of times.

I know ss vary from place to place in what they seem to do. Also mum lives on her own. I also shouted to everyone when I reached a point of refusing to take any part in her care (which tbh never really happened) as I'd reached THAT point
 

Anthoula

Registered User
Apr 22, 2022
2,174
0
Is there no form of monitoring my husband’s steady deterioration? There has been no mention of any follow up of any kind to gauge how he’s getting on - or not. If it were any other form of serious illness, he would have regular hospital/clinic checks to monitor the disease’s progress. But with dementia there seems to be nothing.

I`m afraid there is no onward monitoring. It seems that because there`s no cure there is no desire on the part of the NHS to provide any care or support.
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
Is there no form of monitoring my husband’s steady deterioration? There has been no mention of any follow up of any kind to gauge how he’s getting on - or not. If it were any other form of serious illness, he would have regular hospital/clinic checks to monitor the disease’s progress. But with dementia there seems to be nothing.

I`m afraid there is no onward monitoring. It seems that because there`s no cure there is no desire on the part of the NHS to provide any care or support.
It seems you are right - very sad
 

Pork Pie lady

Registered User
Mar 16, 2013
677
0
Anglia
You are right the lack of care is appalling. 11 years ago my husband actually received his diagnosis by post, although we were both quite realistic and would have been shocked if it was something else you cannot imagine the shock, i was expecting it to be an appointment to discuss the results. The same letter said you are being discharged from the memory clinic an appointment will be made by a psychiatrist. In all that time we have seen someone directly about the dementia a grand total of 3 times.
 

Forgetmeknot

Registered User
Jun 9, 2021
34
0
I’m so sorry to see this and hope you can get some help for both you and your mum.
Why would anyone ask for help before they need it? I suspect that if we did do that, it would be a case of “well everything’s fine at the moment, get on with it and call when you do need help!” No win situation.
Best wishes xx
Thank you - I had a massive moan and made an official complaint with the doctor. Someone is coming to see mum later this morning! Wish me luck x
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
I certainly do and well done for moaning! It’s sad that we have to complain massively before something gets done. Hope it’s a good outcome for your mum and for you xx
 

Yankeeabroad

Registered User
Oct 24, 2021
157
0
Hi all, I think this is fairly common everywhere. Both my parents in the US have dementia and are not monitored for dementia. In fact my mom may not have ever been officially diagnosed but it was so apparent (she declined very rapidly) and combined with her physical problems made it easy to get the insurance claims approved for home help and then the care home.

My dad did finally get an official neuro phyc assessment (as his new replacement GP didn’t really know what to do) which then stated we “might” want to have another assessment in a year or so…. Otherwise, all treatment is via the GP. We have since switched GP to someone who treats mainly people over 55.
 

Vanessa Terry

Registered User
Sep 27, 2021
28
0
I'm afraid this is fairly typical. The Memory Clinic seem to be all about diagnosis - once they've done that it's Job Done - off you go!

As you say, with any other illness there would be regular check ups, especially if someone was deteriorating. Not so with dementia. If there are other medical problems you can see the GP but no one 'does' dementia. The attitude seems to be, 'Yes, you have dementia. It is progressive and terminal. There's nothing we can do.' If you get a 'We're really sorry,' at the end of that you're doing well.

I'm sorry you've been left to just get on with it. I found this forum the most helpful place on earth...
I moved in with my parents last year because my mum has got Alzheimer’s. After a few months, with dad having a stroke I didn’t know which way to turn. I went to see my GP. The next day I had a call from a support worker for my mum and a support worker for me. Plus I have an admiral nurse who I can call if I have any medical issues/concerns. Maybe I have got a good doctors surgery. But, also I have found this site so helpful. You are not alone.
So please ask for help to your GP.
I hope this helps
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
I moved in with my parents last year because my mum has got Alzheimer’s. After a few months, with dad having a stroke I didn’t know which way to turn. I went to see my GP. The next day I had a call from a support worker for my mum and a support worker for me. Plus I have an admiral nurse who I can call if I have any medical issues/concerns. Maybe I have got a good doctors surgery. But, also I have found this site so helpful. You are not alone.
So please ask for help to your GP.
I hope this helps
Thank you, this is very useful - we have a good doctor’s surgery too, they do a great job monitoring my husband’s diabetes. I just wish there was a similar monitoring protocol for dementia!
Best wishes to you and your parents xx
 

Forgetmeknot

Registered User
Jun 9, 2021
34
0
I certainly do and well done for moaning! It’s sad that we have to complain massively before something gets done. Hope it’s a good outcome for your mum and for you xx
Finally the doctor sorted out community nurses to come out on 11 August and the doctor finally came on 12 August but it was all too late and mum sadly passed away on 13 August. I know they probably could not have prevented it but they could have made things more comfortable for her earlier. We shouldn't have to kick up a fuss just to be listened to :(
 

Kath610

Registered User
Apr 6, 2022
196
0
Maldon, Essex
I am sorry to read this too @Forgetmeknot but know that you were a good daughter/carer and you did everything you could during very difficult times. For your mother, passing away was a blessing and you can remember the good times now. Lots of love xx
 

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